Portal de Periódicos da CAPES

A Patient Navigation System to Minimize Barriers for Peritoneal Dialysis in Rural, Low-Resource Settings: Case Study From Guatemala

2017; Elsevier BV; Volume: 2; Issue: 4 Linguagem: Inglês

10.1016/j.ekir.2017.02.020

2468-0249

David Flood, Anita Chary, Kirsten Austad, Pablo García, Peter Rohloff,

Global Public Health Policies and Epidemiology

As a recent editorial advocates,1Nanayakkara N. Wazil A.W.M. Gunerathne L. et al.Tackling the fallout from chronic kidney disease of unknown etiology: why we need to focus on providing peritoneal dialysis in rural, low-resource settings.Kidney Int Rep. 2017; 2: 1-4Abstract Full Text Full Text PDF Scopus (6) Google Scholar there is an urgent need to scale-up peritoneal dialysis in rural areas of low- and middle-income countries (LMICs). In this letter, we describe our experiences providing patient navigation and primary care coordination services for people receiving continuous ambulatory peritoneal dialysis (CAPD) in rural Guatemala. We write from the perspective of a nongovernmental health organization (NGO) that has supported rural Guatemalan patients carrying out CAPD for more than a decade. Guatemala is a lower- to middle-income, Latin American nation with a population of 16 million people and a growing need for rural dialysis services due to a confluence of factors. First, although the epidemiology and risk factors for chronic kidney disease (CKD) in Guatemala are not well understood, there is evidence that CKD mortality is among the highest in the Americas.2Pan American Health Association WHO. Renal failure and chronic kidney disease (CKD) mortality visualization. Available at: http://www.paho.org/hq/index.php?option=com_content&view=article&id=9402&Itemid=41166&lang=en. Accessed February 4, 2017.Google Scholar The emerging entity "chronic kidney disease of nontraditional causes" may be a CKD risk factor in rural Guatemala,3Laux T.S. Barnoya J. Guerrero D.R. et al.Dialysis enrollment patterns in Guatemala: evidence of the chronic kidney disease of non-traditional causes epidemic in Mesoamerica.BMC Nephrol. 2015; 16: 54Crossref PubMed Scopus (31) Google Scholar and regional data show that diabetic renal disease is a significant driver of population mortality.4Alegre-Diaz J. Herrington W. Lopez-Cervantes M. et al.Diabetes and cause-specific mortality in Mexico City.N Engl J Med. 2016; 375: 1961-1971Crossref PubMed Scopus (160) Google Scholar Second, approximately 40% of the population are rural indigenous Maya,5Instituto Nacional de Estadística. Encuesta Nacional de Condiciones de Vida 2014: Tomo I. Guatemala, Central America, 2016. Available at: http://www.ine.gob.gt/sistema/uploads/2016/02/03/bWC7f6t7aSbEI4wmuExoNR0oScpSHKyB.pdf. Accessed January 29, 2017.Google Scholar a group that faces significant socioeconomic, geographic, and language barriers in accessing specialty nephrology care that is available only in urban tertiary centers.6Chary A. Rohloff P. Privatization and the New Medical Pluralism: Shifting Healthcare Landscapes in Maya Guatemala. Lexington Press, Lanham, MD2015Google Scholar Finally, Guatemala's population is growing and aging rapidly, greatly increasing the absolute number of people at risk for CKD.7Haub K. Gribble J. Guatemala: beyond the early phase of the demographic transition.Popul Bull. 2011; 66: 6-7Google Scholar Nephrology care for rural Guatemalan adult patients with end-stage renal disease (ESRD), including dialysis, is primarily delivered by the National Center for Chronic Renal Disease (UNAERC). UNAERC is a public institution in Guatemala City that is legally tasked with making dialysis available to citizens.8Comisión Presidencial Coordinadora de Ia Política del Ejecutivo en materia de Derechos Humanos. Informe del Estado de Guatemala: Respuesta a la carta de alegación enviada por el Relator Especial sobre "el derecho de toda persona al disfrute del mas alto nivel posible de salud fisica y mental" en relación con Ia situación de los pacientes de escasos recursos diagnosticados con insuficiencia renal. Guatemala, 2013. Available at: https://spdb.ohchr.org/hrdb/23rd/Guatemala_23.04.13_(1.2013).pdf. Accessed January 29, 2017.Google Scholar However, UNAERC has had challenges, as its funding increases have not kept up with a rapidly growing dialysis caseload.9Muñoz Palala G. Insuficiencia renal afecta a más personas. Prensa Libre. October 9, 2016. Available at: http://web.archive.org/web/20170106065232/http://www.prensalibre.com/guatemala/comunitario/insuficiencia-renal-afecta-a-mas-personas. Accessed January 29, 2017.Google Scholar From a volume of fewer than 2000 persons receiving dialysis in 2008, UNAERC's census had increased to 4286 total dialysis patients as of August 2016; of these, 2710 patients were enrolled in its continuous ambulatory peritoneal dialysis (CAPD) program.10Unidad Nacional de Atención al Enfermo Renal Crónico (UNAERC). Pacientes activos por programa y consulta del mes según bioestadísticas. Available at: http://unaerc.gob.gt/estadisticas/pacientes-activos-por-programa-y-consulta-del-mes-segun-bioestadisticas/. Accessed January 29, 2017.Google Scholar Per population, UNAERC's volume helps to give Guatemala 1 of the highest peritoneal dialysis prevalence rates in Latin America and globally.11Jain A.K. Blake P. Cordy P. et al.Global trends in rates of peritoneal dialysis.J Am Soc Nephrol. 2012; 23: 533-544Crossref PubMed Scopus (380) Google Scholar, 12Cusumano A.M. Rosa-Diez G.J. Gonzalez-Bedat M.C. Latin American Dialysis and Transplant Registry: Experience and contributions to end-stage renal disease epidemiology.World J Nephrol. 2016; 5: 389-397Crossref PubMed Google Scholar The UNAERC staff, although skilled and dedicated, are overburdened by patient volume and frustrated by frequent delays in payment of their wages.13León Duque JE. Informe anual circunstanciado: situación de los derechos humanos y memoría de labores. Procurador de los Derechos Humanos: Guatemala City, Guatemala, 2015. Available at: http://web.archive.org/web/20170201000000*/http://www.pdh.org.gt/archivos/descargas/Biblioteca/Informes%20Anuales/iac_2015._f0.pdf. Accessed January 29, 2017.Google Scholar In addition, UNAERC has been subject to allegations of corruption.14Hernández OJ. UNAERC, negocios de mala sangre. Plaza Pública. October 7, 2015. Available at: https://www.plazapublica.com.gt/content/unaerc-negocios-de-mala-sangre. Accessed February 4, 2017.Google Scholar Care received at UNAERC is technically free of charge, with CAPD supplies delivered to rural homes throughout the country. Nonetheless, barriers still exist, and UNAERC's dialysis enrollment rates tend to be much lower in rural highland areas with predominantly Maya indigenous populations.3Laux T.S. Barnoya J. Guerrero D.R. et al.Dialysis enrollment patterns in Guatemala: evidence of the chronic kidney disease of non-traditional causes epidemic in Mesoamerica.BMC Nephrol. 2015; 16: 54Crossref PubMed Scopus (31) Google Scholar For example, UNAERC patients must purchase out-of-pocket all essential dialysis-related medications such as erythropoietin, iron, calcium, and antihypertensive agents, the costs of which can total more than patients' yearly incomes.13León Duque JE. Informe anual circunstanciado: situación de los derechos humanos y memoría de labores. Procurador de los Derechos Humanos: Guatemala City, Guatemala, 2015. Available at: http://web.archive.org/web/20170201000000*/http://www.pdh.org.gt/archivos/descargas/Biblioteca/Informes%20Anuales/iac_2015._f0.pdf. Accessed January 29, 2017.Google Scholar CAPD patients even from remote areas in Guatemala must travel regularly to the capital city for clinic visits or risk that dialysis supplies will be withheld; each trip might require a day or more of travel time and cost several days' wages. Finally, one-fourth of Guatemalans are monolingual in an indigenous language,5Instituto Nacional de Estadística. Encuesta Nacional de Condiciones de Vida 2014: Tomo I. Guatemala, Central America, 2016. Available at: http://www.ine.gob.gt/sistema/uploads/2016/02/03/bWC7f6t7aSbEI4wmuExoNR0oScpSHKyB.pdf. Accessed January 29, 2017.Google Scholar and care at UNAERC is delivered exclusively in Spanish. The authors of this letter are staff at Wuqu' Kawoq, an NGO that is dedicated to providing health services for Mayan patients in rural Guatemala. In collaboration with UNAERC, we have supported approximately 25 rural patients carrying out CAPD in 4 different departments since 2007. Our role in the care of CAPD patients is to attenuate barriers experienced at UNAERC by providing patient navigation services and coordinating primary care (Table 1). CAPD patients are enrolled in our organization's Complex Care Program, which gives them access to our team of patient navigators whose role combines social work, case management, interpretation, patient advocacy, and logistical coordination. Patient navigators arrange transportation from rural areas to the capital city, accompany patients to their UNAERC appointment, interpret between Mayan languages and Spanish, ensure that laboratory results and documents are in order, and advocate for patients during appointments.15Chary A. Flood D. Austad K. et al.Navigating bureaucracy: accompanying indigenous Maya patients with complex health care needs in guatemala.Hum Organ. 2016; 75: 305-314Crossref Scopus (18) Google Scholar Elements of this program were adapted from patient navigation interventions to reduce cancer disparities in high-income settings16Wells K.J. Battaglia T.A. Dudley D.J. et al.Patient navigation: state of the art or is it science?.Cancer. 2008; 113: 1999-2010Crossref PubMed Scopus (412) Google Scholar and from accompaniment models of global health popularized by NGOs, such as Partners In Health.17Behforouz H.L. Farmer P.E. Mukherjee J.S. From directly observed therapy to accompagnateurs: enhancing AIDS treatment outcomes in Haiti and in Boston.Clin Infect Dis. 2004; 38: S429-S436Crossref PubMed Scopus (135) Google ScholarTable 1Challenges, opportunities, and solutions for support of peritoneal dialysis in rural GuatemalaChallengesOpportunitiesSolutionsLanguage and literacy barriers to specialty nephrology care for indigenous Maya populationRising number of bilingual Maya indigenous social workers experienced in issues related to health advocacyLow cost of labor in GuatemalaRecruit professional Maya social workers to serve as patient navigatorsPatients live in rural, difficult-to-access settingsExtensive, reliable cellular network coverageHigh mobile telephone penetration throughout countryBulk of care coordination and care monitoring provided via telephone encountersHigh cost of ESRD medications such as erythropoietin, i.v. iron, and calcitriolRobust generic pharmaceutical industry in GuatemalaInstitutional formulary limited to generic drugsSubstitutions as feasible to reduce costsPatients present late in CKD course, often with irreversible renal damageHigh-quality nephrology care, including CAPD management, available in capital cityPatient navigators coordinate transportation and provide accompaniment to link rural communities and urban referral centersSupporting CAPD is expensive and requires long-term commitments to patientsBlended financing models are emerging in global healthCross-training of primary care staff allows for coverage of core salary obligations from general operating fundsCrowdfunding provides funding for initial investment in careGrants permit exploration of new areas of programmatic innovationThis table is adapted from Flood D, Mux S, Martinez B, et al. Implementation and outcomes of a comprehensive type 2 diabetes program in rural Guatemala. PLoS One. 2016;11:e0161152.23Flood D. Mux S. Martinez B. et al.Implementation and outcomes of a comprehensive type 2 diabetes program in rural Guatemala.PLoS One. 2016; 11: e0161152Google Scholar CAPD, continuous ambulatory peritoneal dialysis; CKD, chronic kidney disease; ESRD, end-stage renal disease. Open table in a new tab This table is adapted from Flood D, Mux S, Martinez B, et al. Implementation and outcomes of a comprehensive type 2 diabetes program in rural Guatemala. PLoS One. 2016;11:e0161152.23Flood D. Mux S. Martinez B. et al.Implementation and outcomes of a comprehensive type 2 diabetes program in rural Guatemala.PLoS One. 2016; 11: e0161152Google Scholar CAPD, continuous ambulatory peritoneal dialysis; CKD, chronic kidney disease; ESRD, end-stage renal disease. Although CAPD patients generally visit UNAERC once every other month, our medical staff is involved in day-to-day care in a role analogous to that of primary care providers. We treat underlying diseases such as diabetes and hypertension, monitor for clinical and laboratory complications of CKD that arise between UNAERC visits, and manage any non−CKD-related health concerns in patients' home villages. Patient navigators make frequent home visits or telephone calls to check in with CAPD patients, who also have access to our organization's 24-hours-a-day, 7-days-a-week nursing hotline if questions arise such as concerns of peritonitis. We offer all of these services, including the provision of medicines and laboratory tests prescribed by UNAERC, free of charge. We also fund the construction of sterile dialysis rooms in patients' homes, which, although not a direct medical cost, is an integral component of patient safety. To date, we have experienced only 1 episode of iatrogenic peritonitis among our CAPD cohort. Financing these services is a major challenge, given that CAPD patient navigation is very expensive compared to other global health interventions, and that there is limited international funding available for noncommunicable diseases. Such funding challenges prohibit us from accepting all rural ESRD patients who wish to enter our program. We budget $1800 per patient per year for new CAPD starts and approximately $500 per patient per year for ongoing cases, although this latter figure varies significantly based on an individual's underlying comorbidities. We are unable to supply i.v. iron, calcitriol, or non−calcium-containing phosphate binders because of their cost. We dispense erythropoietin when prescribed by UNAERC; its use by fewer than 2 dozen patients (of more than 20,000 patients served each year in our organization's clinics) accounts for 9% of our annual pharmaceutical budget. In this letter, we describe our organization's experiences implementing a patient navigation and primary care coordination program to support rural CAPD patients in Guatemala. Our model provides a conceptually different approach from those of programs in Sri Lanka,1Nanayakkara N. Wazil A.W.M. Gunerathne L. et al.Tackling the fallout from chronic kidney disease of unknown etiology: why we need to focus on providing peritoneal dialysis in rural, low-resource settings.Kidney Int Rep. 2017; 2: 1-4Abstract Full Text Full Text PDF Scopus (6) Google Scholar China,18Jiang Z. Yu X. Advancing the use and quality of peritoneal dialysis by developing a peritoneal dialysis satellite center program.Perit Dial Int. 2011; 31: 121-126PubMed Google Scholar and Colombia,19Sanabria M. Devia M. Hernandez G. et al.Outcomes of a peritoneal dialysis program in remote communities within Colombia.Perit Dial Int. 2015; 35: 52-61Crossref PubMed Scopus (16) Google Scholar which have deployed rural satellite offices to bring nephrology care closer to rural communities. Taken together, these types of strategies—whether accompanying rural patients to urban specialty care or bringing urban specialty care to rural patients—can be viewed as addressing the "system-level barriers" to rural dialysis described in a recent meeting report on kidney care needs in LMICs.20Jha V. Arici M. Collins A.J. et al.Understanding kidney care needs and implementation strategies in low- and middle-income countries: conclusions from a "Kidney Disease: Improving Global Outcomes" (KDIGO) Controversies Conference.Kidney Int. 2016; 90: 1164-1174Abstract Full Text Full Text PDF PubMed Scopus (56) Google Scholar Like the editorial by Nanayakkara et al.,1Nanayakkara N. Wazil A.W.M. Gunerathne L. et al.Tackling the fallout from chronic kidney disease of unknown etiology: why we need to focus on providing peritoneal dialysis in rural, low-resource settings.Kidney Int Rep. 2017; 2: 1-4Abstract Full Text Full Text PDF Scopus (6) Google Scholar we urge implementers in other settings to share their clinical, programmatic, and delivery experiences with rural peritoneal dialysis in rural, resource-limited settings. Future directions of research on the topic of rural dialysis would also require better epidemiologic data, as the causes of CKD in LMICs are heterogeneous and poorly understood.21Stanifer J.W. Muiru A. Jafar T.H. et al.Chronic kidney disease in low- and middle-income countries.Nephrol Dial Transplant. 2016; 31: 868-874Crossref PubMed Scopus (133) Google Scholar In Guatemala and similar settings, further investigation into the costs of rural CAPD and the health-seeking behavior of ESRD patients is also important. Finally, although this letter does not specifically discuss Guatemala's pediatric nephrology care programs,22Lou-Meda R. Comprehensive approach to pediatric kidney diseases in Guatemala.Clin Nephrol. 2015; 83: 82-84Crossref PubMed Scopus (5) Google Scholar access to dialysis for rural children in LMICs is another critical area of future inquiry. All the authors declared no competing interests. The authors thank the patients and staff at Wuqu' Kawoq | Maya Health Alliance. This work was funded from operating funds of Wuqu' Kawoq.